This article presents the initial results of an ongoing constructivist grounded theory study (Charmaz, 2000) exploring the impact of dementia on the everyday life and relationships of older spousal couples. Using a process of ‘emergent fit’ (Glaser, 1978) and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevance of ‘awareness context theory’ (Glaser & Strauss, 1965) and the ‘dynamics of dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combination of existing literature and new data provide further insights into how couples actively work to ‘construct’ awareness in a way that, for the majority, maintains both a sense of ‘self’ for the person with dementia (PWD) and the integrity of the relationship between couples. It is suggested that a ‘mutual acknowledgement’ of the diagnosis and a subsequent focus on maintaining a meaningful life in the present combine to create a ‘nurturative relational context’ in which living with dementia unfolds.
Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (2nd ed.; pp. 509-536). Thousand Oaks, CA: Sage .
2.
Clare, L. (2002). Developing awareness about awareness in early stage dementia: The role of psychosocial factors . Dementia, 1(3), 295-312 .
3.
Coleman, P.G. , & Mills, A. (2001). Philosophical and spiritual perspectives. In C. Cantley (Ed.), A handbook of dementia care (pp. 62-76). Buckingham: Open University Press .
4.
Corbin, J.M. , & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco, CA: Jossey Bass .
5.
Crisp, J. (1999). Towards a partnership in maintaining personhood. In T. Adams & C.L. Clarke (Eds.), Dementia care: Developing partnerships in practice (pp. 95-120). London: Baillière Tindall .
6.
Folstein, M.F. , Folstein, S.E. , & McHugh, P.R. (1975). Mini-Mental State: A practical guide for grading the cognitive state of patients for the clinician . Journal of Psychiatric Research, 12(3), 189-198 .
7.
Forbat, L. (2003). Relationships difficulties in dementia care: A discursive analysis of two women’s accounts . Dementia, 2(1), 76-84 .
8.
Gilles, B.A. (2000). A memory like clockwork: Accounts of living through dementia . Aging and Mental Health, 4(4), 366-374 .
Glaser, B.G. , & Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine .
12.
Goldsmith, M. (1996). Hearing the voice of people with dementia: Opportunities and obstacles. London: Jessica Kingsley .
13.
Grant, G. , Ramcharan, P. , McGrath, M. , Nolan, M.R. , & Keady, J. (1998). Rewards and gratifications among family caregivers: towards a refined model of caring and coping . Journal of Intellectual Disability Research, 42(1), 58-71 .
14.
Hirschfield, M.J. (1983). Home care versus institutionalization: Family caregiving and senile brain disease . International Journal of Nursing Studies, 20(1), 23-32 .
15.
Hutchinson, S.A. , Leger-Krall, S. , & Wilson, H.S. (1997). Early probable Alzheimer’s disease and awareness context theory . Social Science and Medicine, 45(9), 1399-1409 .
16.
Keady, J. (1997). Maintaining involvement: A meta concept to describe the dynamics of dementia. In M. Marshall (Ed.), The state of the art in dementia care (pp. 25-31). London: Centre for Policy on Ageing .
17.
Keady, J. (1999). The dynamics of dementia: A modified grounded theory study. PhD thesis, University of Wales, Bangor.
18.
Keady, J. , & Gilliard, J. (1999). The early experience of Alzheimer’s disease: implications for partnership and practice. In T. Adams & C. Clarke (Eds.), Dementia care: Developing partnerships in practice (pp. 227-256). London: Baillière Tindall .
19.
Keady, J. , & Nolan, M.R. (2003). The dynamics of dementia: Working together, working separately, or working alone? In M.R. Nolan , U. Lundh , G. Grant , & J. Keady (Eds.), Partnerships in family care: Understanding the caregiving career (pp. 15-32). Maidenhead: Open University Press .
20.
Kitwood, T. (1997a). Personhood, dementia and dementia care. In S. Hunter (Ed.), Dementia: Challenges and new directions (pp. 9-23). London: Jessica Kingsley .
21.
Kitwood, T. (1997b). The concept of personhood and its relevance for a new culture of dementia care. In B.M.L. Miesen & G.M.M. Jones (Eds.), Caregiving in dementia: Research and applications (Vol. 2; pp. 3-13). London: Routledge .
22.
Kitwood, T. (1997c). Dementia reconsidered: The person comes first. Buckingham: Open University Press .
23.
Mamo, L. (1999). Death and dying: Confluence of emotion and awareness . Sociology of Health and Illness, 21(1), 13-36 .
24.
Meisen, B.M.L. (1997). Awareness of dementia patients and family grieving: A practical perspective. In B.M.L. Miesen & G.M.M. Jones (Eds.), Caregiving in dementia: Research and applications (Vol. 2; pp. 67-79). London: Routledge .
25.
Montgomery, R.J.V. , & Williams, K.N. (2001). Implications of differential impacts of care-giving for future research on Alzheimer care . Aging and Mental Health, 5(Supplement 1), S23-S34 .
26.
Motenko, A.K. (1989). The frustrations, gratifications and well-being of dementia caregivers . Gerontologist, 29(2), 166-172 .
27.
Nolan, M.R. , Booth, A. , & Nolan, J. (1997). Preparation for multi professional/multi agency health care practice: The nursing contribution to rehabilitation within the multi disciplinary team. A literature review and curriculum analysis commissioned by the English National Board for Nursing, Midwifery and Health Visiting (284 pp.).
28.
Nolan, M.R. , Grant, G. , & Keady, J. (1996). Understanding family care: A multidimensional model of caring and coping. Buckingham: Open University Press .
29.
Pearce, A. , Clare, L. , & Pistrang, N. (2002). Managing sense of self: Coping in the early stages of Alzheimer’s disease . Dementia, 1(2), 173-192 .
30.
Phinney, A. (1998). Living with dementia from the patient’s perspective . Journal of Gerontological Nursing, 24(6), 8-15 .
31.
Phinney, A. (2002a). Fluctuating awareness of the breakdown of the illness narrative in dementia . Dementia, 1(3), 329-344 .
32.
Phinney, A. (2002b). Living with the symptoms of Alzheimer’s disease. In P. Braudy Harris (Ed.), The person with Alzheimer’s disease (pp. 49-74). Baltimore, MD: The John Hopkins University Press .
33.
Pollitt, P.A. , O’Connor, D.W. , & Anderson, I. (1989). Mild dementia: perceptions and problems . Ageing and Society, 9, 261-275 .
34.
Robinson, P. , Ekman, S.L. , Meleis, A.I. , Winblad, B. , & Wahlund, L.O. (1997). Suffering in silence: The experience of early memory loss . Health Care in Later Life, 2(2), 107-120 .
35.
Salander, P , & Spetz, A. (2002). How do patients and spouses deal with the serious facts of malignant glaucoma?Palliative Medicine, 16, 305-313 .
36.
Schulz, R. , & Williamson, G.M. (1997). The measurement of caregiver outcomes in AD research . Alzheimer’s Disease and Related Disorders, 11(Supplement 6), 1-6 .
37.
Smyth, K.A. , Neundorfer, M.M. , Koss, E. , Geldmacher, D.S. , Ogrochi, P.K. , & Whitehouse, P.J. (2002). Quality of life and deficit identification in dementia . Dementia, 1(3), 345-358 .
38.
Timmermans, S. (1994). Dying of awareness: The theory of awareness contexts revisited . Sociology of Health and Illness, 16(3), 322-339 .
39.
Whitlach, C.J. (2001). Including the person with dementia in family care-giving research . Aging and Mental Health, 5(Supplement 1), S20-S22 .
40.
Woods, R.T. (2001). Discovering the person with Alzheimer’s disease: Cognitive, emotional and behavioural aspects . Aging and Mental Health, 5(Supplement 1), S7-S16 .
41.
Wright, L.K. (1993). Alzheimer’s disease and marriage. London: Sage .
42.
Wuest, J. (2000). Negotiating with helping systems: An example of grounded theory evolving through emergent fit . Qualitative Health Research, 10(1), 51-70 .
